The Quality of the Relationship Between Persons with Dementia and Their Family Caregivers

BPSD-related distress seems to be directly influenced by caregiver reactivity to BPSD, burden, competence, and relationship quality [72]. BPSD are major threats to the quality of long-standing relationships between patients and their spouses, children, or significant others who become caregivers. Moreover, if the prior quality of their relationship was poor, the road is paved for worsening strain and further BPSD, as reactive to interpersonal issues. These caregivers easily misinterpret agitated behavior as purposefully provocative and worsen the situation by replying with anger, whereas if relationships were good prior to the onset of dementia, caregivers tend to be less critical [51, 73]. De Vugt et al. reported that it is patients’ passive behavior (e.g., apathy), rather than excessive behavior, that has the greatest impact on the deterioration of the marital relationship [74].

It is worth coming back to EE in order to emphasize how circularities also apply here. The impact of EE on patients is crystal clear: when caregiver communication conveys strong negative feelings, patients may experience, e.g., stress, fear, or anger and display negative feedbacks. Caregivers may then experience rejection, embarrassment, or other unpleasant emotions, leading to a vicious circle of negative interactions [45].

Fearon and colleagues discussed different ways in which this EE concept could help understand the importance of relationship quality in dementia [73]. They suggested that the protective effect of previously high quality relationships may be compromised when intimacy in the current relationship becomes low. Intimacy does indeed tend to diminish as cognitive impairment progresses, making it difficult for the patient to remain a reliable confident, to express affection as previously, or to participate in family conflict resolution when hostility ensues. On the other hand, poor past relationships also lead to EE, as caregivers feel trapped in caregiving, and unsolved relational issues are reactivated. Eisdorfer postulated equity (reciprocity) as one of the principal motivations for caregiving in dementia [75]. However, some caregivers are unable to see their situation as an opportunity to repay past kindness they did not in fact experience. Fearon et al. suggest that high EE is characteristic of low intimacy caregiver-patient relationships, stating that “in addition to high EE attitudes causing problems in the interpersonal relationship, they may also be reactive to them” [73].

Other insights come from Kitwood’s views on dementia caregiving [31]. Positive caregiving environments require emotional availability, empathic understanding of the needs of the person with dementia, and acceptance of the validity of their experience. “Non-acceptance” strategies appear to predict worse outcomes than “supporting” strategies that adapt to the patient [76]. The “investment model” suggests that interdependence is felt as commitment to a relationship through both good and bad times, implying investments that include sacrifice for one’s partner [35].

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